Just been diagnosed

[Lilbob]

Hi all,

Just been diagnosed on Thursday as having an A/N, 11 mm,waiting now for a referral to a neurologist at LGI leeds. Went to ENT after my tinnitus worsened, luckily my consultant sent me for an MRI. Had one in 2001 when I started with tinnitus and it was clear, so this came as a bit of a shock, not too sure what to expect now, I feel like it will drag on before I get to LGI and what would be the best approach.

[JDWYER1980]

Hi, I was diagnosed with a 9mm x 4mm intracanicular acoustic neuroma in Feb 17. I was put on watch and wait and had another mri in Feb 18. Fortunately it hadn't grown and I have an mri scheduled for two years time (Feb 20).

I first started having tinnitus in summer 16 and had a hearing test that showed slight high sensory hearing loss. An mri was ordered and the AN picked up.

As your AN is classed as small there may be a strong case for watch and wait to establish any further growth. Hope this helps. Best Wishes Damian

[Lilbob in reply to JDWYER1980]

Thanks Damian, good luck with yours!

Best wishes,

Stuart

[Leodo]

Hi you are in good hands at Leeds, my wife has had a number of procedures under a consultant Dr Stuart Ross there. The size sounds quite small so may be watch and wait. My wife had gamma knife radiotherapy in September last year for a medium sized AN.

[Kristyll]

Hi best to wait to be able to decide what your options are. Try not to worry too much before hand WE are all still here to tell the tale. Best of luck x

[anan88]

Yes, we're all here and have gone through it, and are doing fine. Worrying is no fun and so unproductive, so do your best not to. Good luck with it!

[drdeanbellavia]

Waiting is a gamble if the AN is in a bad place on your 8th cranial nerve. Mine was only 15mm, but it was in the bony area going into the ear and it grew enough in only one month to destroy the nerve and blood to my left ear. It is best to resolve it ASAP and the Gamma knife approach is the best. After Gamma knife my AN was dead and it reduced in size to 50% in the following year; that was 16 years ago and it has never grown in size. I don't want to alarm you; but just be cautious about the location of the AN before making your decisions about waiting or treatment.

[maggieL]

Hi Lilbob, I have been under the care of Mr Kelly at LGI for over 3 years when my 12mm AN was diagnosed. I am on watch and wait and have been having annual scans which have shown no further growth. I am now on 2 yearly MRI scans. I would expect you to be put on w&w also as 11mm is considered small. I have had hearing tests and been given hearing aids which do help in certain surroundings. The care at LGI is excellent but waitiing for results can drag on. You will probably be allocated a skull bas nurse who is invaluable if you have any questions or require more information. Above all try not to worry it will be fine. If I can help in any other way or you want to compare notes pm me. Mags x

[Lilbob]

Hi Mags, thanks for that, am fairly settled with it now I think. Not as worried as I was, I’ve had lots of positive messages on here ! It’s very heart warming to know there’s People here to talk to that know what your going through. I should imaging I will get my oppointment for lgi in the next 2/3 weeks . I imaging like you it will be w&w.

Thanks again to every one that has messaged me,

Stuart

[smithy1313]

Stuart - I had mine removed at the LGI in 2009. Excellent care. Was under Mr Kelly and also Philip Van Hille who has now retired. Just wait til you know what the options are. Think is there's no urgent need for action with these types of tumours. They can grow as slowly as 1mm a year.

(Wouldnt take too much notice of Dr DeanBellevia who I'm not even sure is a doctor of medicine let alone a neurologist).

Kind regards Linda

[Lilbob in reply to smithy1313]

Hi Linda, thankyou for your reply. I’m fairy relaxed now, not heard from LGI yet so I think that’s a good thing (not urgent). It did come as a shock, but am sure now all’s going to be fine what ever the outcome! Listening to folks on here I expect to be put on w&w .

Thanks again

Stuart

[draws001 in reply to smithy1313]

Jus returned to website after a while.......re your comment on Dr DeanListenToMe(IKnowMoreThanYou)Bellevia, apart from the bit ‘not to pay too much attention’ to anyfin he says.......replace the ‘too much’ wiv ANY....... n that’s me in total agreement with you. He needs to understand that ‘sharing experiences’ does not in any way translate as telling someone what they should do. I responded a while back as he ‘advised’ a W&W to request gamma rather than W&W........!? Imagine a consult wiv him: “You do have a small AN which is not causing any problems and though we could watch and wait (possibly for a number of years!) Let’s go Gamma & see if we can really annoy it” 😂😂😂 Wot a prick! Luv the way you put it.........as my response was to someone at diagnosis with all the stress/anxiety etc it brings, and as most of us know, are looking for reassurance/information via others who are/have been diagnosed with an AN.

‘Dr’ DeanBellevia would do better keeping his narcissistic ramblings to himself (and hopefully.....Burst! 😂😂😂)

[smithy1313 in reply to draws001]

I had actually had to stop following this website due to this person having an opinion on nearly every post on here. Sad really as some of the comments are really helpful. I just don't think he's 'qualified' to be giving out advice. Linda x

[Ballantyne56]

Hi Lilbob, I am new in the site and I was wondering how you are doing with your AN ?

Regards